MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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aliersk's picture
Replies 2
Last reply 12/21/2013 - 5:37pm
Replies by: aliersk, Anonymous

I have one cycle worth of tremodar I paid $3k for which my husband did not take. He sadly passed away last month and i've been wondering what to do with it.

I wish everyone success with their treatment with this awful disease.

Please send me a private message.

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Richard_K's picture
Replies 8
Last reply 1/10/2014 - 10:51am

For those of you familiar with me, you know I have been on Zelboraf for quite some time and that over the past fifteen months or so, I have had issues with my bilirubin being high.  At my six week NYU check-up this week, the bilirubin count came back quite low.

When I came home from NYU the mailman had delivered the news from my recent colonoscopy  – no problem, repeat in five years.

Today I met with my urologist about last week’s prostate biopsy (third biopsy since diagnosis) – prostate cancer – NED!

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mark1101's picture
Replies 4
Last reply 12/26/2013 - 3:21pm
Replies by: mark1101, awillett1991, POW

Got the results of my last PET scan.  They noted a small (less the 1 cm) shadow on my right posterior iliac and ordered a biopsy.  The biopsy confirmed a melona met on the bone.  My onc is suggesting we postpone treatment of this for a mont or so, take anothe scan see what changes occur.  If it is smaller or gone, do nothing.  Apparently Ipi is noted for having a delayed reaction effect on  mets sometimes.  If it is the same, go in surgically and kill it with a hot or cold needle at the surgeon's recommendation.  If it has enlarged or spread to other sites, then we are considering IL-2 HD.  I am considered of good general health and good likely tolerate this treatment with high probability of backing the melanoma off.

Anyone else experienced a similar set of did it go for you.  Also anyone familiar wtih IL-2 HD and its benefits relative to the side effects.  How did you have it administered?

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Anonymous's picture
Replies 6
Last reply 12/28/2013 - 2:35am

I'm anxiously waiting for call back from my onc doc about a node that lit up on scan earlier this week...she didn't know a whole lot when she phoned last night at 10 final report as yet, but at least one node had lit up; she said it's likely in drainage area from lung mass removed by VATS early Sept....

is the standard in these cases (well, I really don't know the case as yet I guess!) resection if at all possible, followed by radiation? I'm not sure a lit up node qualifies me for the ipi/nivo trial...but would definately like this thing (hopefully it's only one) removed...I so so so appreciate everyone's input and support...thanks very much




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joy_'s picture
Replies 3
Last reply 12/22/2013 - 8:02am
Replies by: BrianP, WendyD., Janet Lee

Hi everyone.  I have been an occasional poster and long time reader of this forum - since my husband's initial diagnosis nearly 6 years ago.  I know for me, it has always been encouraging to read the good news so today I would like to share some with you all.

I don't know if the patnet still works so here is a summation of my husband's journey.  He was diagnosed stage II in 2008.  All was fine and dandy until 2010 when mel reared its ugly head showing up in his lymph nodes which lead to a LND and horrible month of interferon.  Again, all fine and dandy until this past February when another enlarged node was found and scans revealed spots on lungs, liver, adrenal glands, etc.  BAM! - stage IV.  He is BRAF positive so decided to participate in a trial using Zelboraf for 6 weeks then Ipi then Zelboraf.

He did great on Z, and tolerated 3 doses of ipi at 10mg/kg when all of a sudden he had weakness and started losing mobility.  An MRI showed lepotmeningeal disease.  My husband was paralyzed from the waist down in the matter of a few days.  They thew the kitchen sink at him, radiation, Decadron, etc.  We all thought he was crashing.  In a few weeks he went from a wheelchair to a walker, and they put him back on Zelboraf. 

A neuro-onc said he might get 60% mobility back.  No one could believe how great he was doing.  They started questioning whether it was leptomeningeal disease or polyneuropathy from ipi.  He was walking again in to time though and even able to kick a leg over his motorcycle to ride that.  Still, no one can believe how well he is doing.  

So now for the really good news.  He has now been on Zelboraf for 6 months and had scans last week which showed NED!  In addition to that, his skin is showing depigmentation which indicates a late response to Ipi.  He is still very fatigued and has nausea & vomitting.  Life is still not loads of fun, but there is nothing like NED to brighten your holiday spirits!

This has been the most difficult year of our lives.  A roller coaster that so many of you are familiar with, but at the moment we are on the upswing and enjoying every minute we can!  

Press on, melanoma peeps.  I know the battle is tough, our family has weathered this storm and have the battle scars too.  I hope you are encouraged though to hear some good news.

Merry Christmas, Happy Holidays, and may God bless you.

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Julie in SoCal's picture
Replies 2
Last reply 12/27/2013 - 5:41pm
Replies by: Michelem, POW

Dear friends,

I"m now back in Southern California after a bit of a whirlwind ride from Bangkok.  

Yesterday I had scans and saw my Rock Star Mel Dr.  Scans came back all fine.  No indication of mel anywhere!  Needless to say i'm over the moon with these results. I didn't quite have myself buried and gone, but I did have a very real discussion with myself and family about the possibilities, including that this would be a "career ending injury" as my brother called it.  So coming out of this only in-transit mets is fabulous!

Because I left one in place (thank you all for encouraging me to do this!!!) I technically have active measurable disease and am therfore, technically eligable for ippi!  So sometime after the New Year, I'll start.  Amazing.  

Thank you so much for your advice and encouragement!

Merry Christmas and Blessings to you in this New Year!








Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

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delora's picture
Replies 7
Last reply 12/21/2013 - 6:43pm
Replies by: G-Samsa, arthurjedi007, POW, Anonymous

Have any of you had the Vemurafenib Followed by a Continuous Administration of Ipilimumab treatment plan?  What are the side eddects?  Do doctors prescribe main medication to alleviate some of he pain?  This is the trial I may be starting.




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hdelancey23's picture
Replies 14
Last reply 12/27/2013 - 11:24pm

My mom went into the ER this morning due to extreme pain. They gave her a shot of diladid for pain and it helped. Her doctor ordered an x ray to see what is causing pain in her back. He said it is probably tumor related. We will know more tomorrow when the doctor Looks at the x ray. She talked to another doctor today which said that they can't do gamma knife or SRS on her brain because there is just too Many lesions in her brain. Her only option now is to o whole brain radiation. Her doctor said that she will probably only have a couple weeks left. I just don't believe that. last December he said three to six months and that was a year ago. I am concerned about what the whole brain radiation will do because she already has swelling of the brain and that is a side effect of the radiation. I just don't know how much more swelling she can take. She does not want to go on hospice because she can not do anymore treatments. She wants to do this on her terms and keep fighting until the very end. This has been and continues to be a very rough road for her. It is an awful thing when you get used to hearing bad news. If anybody has advice or bits of what yo expect it would be great.

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Anonymous's picture
Replies 2
Last reply 12/19/2013 - 5:34pm
Replies by: POW, Janner

I am at risk for skin cancer, as i am a kidney transplant PT. I went to a local derm, was way over due. My friend worked for him, and then went to work for another derm, and he is known for cutting moles out on everyone, and  alot. So I really should have gone to  a more compietent derm, i waited 2 hours in his office, then left he called my cell and left a VM, saysing he had emergency, and i could come back in later, and gave his private cell. so i came back in. He looked at my back and said, these look like they could turn into a problem, I will remove them. he checked my stomach, and asked it i have anything on my feet. I have 2 that I was born with or from childhooh. He wants to remove them next time. He said to come back in 2 weeks, and to take them out. I said why cant you now..oh well I dont like to take many of at one time. but they wont turn into cancer in 2 weeks.

So I am going to better derm for FU, but I called to get my results,and the secretary said they only call if it sbad, however 9 days later she said my results are not in. I am very worried, if must be bad, if they are not back yet. dont they do further tests? I have been suffering from severe anxiety latetly. but i am really stressing over this. I wish I went anually to the derm. after my transplant.

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Mat's picture
Replies 1
Last reply 1/3/2014 - 1:41pm
Replies by: tschmith

From Seeking Alpha (investor website):

Merck Vs. Bristol In PD-1 Cancer Drug Race

Dec 18 2013, 18:48  | 7 commentsby: Peter Geschek  |  about: MRK, BMY, includes: RHHBY Disclosure: I have no positions in any stocks mentioned, and no plans to initiate any positions within the next 72 hours. I wrote this article myself, and it expresses my own opinions. I am not receiving compensation for it (other than from Seeking Alpha). I have no business relationship with any company whose stock is mentioned in this article. (More...)

In November Merck (MRK) reported additional data about its lambrolizumab (previously known as MK-3475) trial, an experimental anti-PD-1 immunotherapy, conducted in 135 patients with advanced melanoma.


The results from Merck's trial were almost identical to the results from the Bristol-Myers' (BMY) trial which tested a combination of Yervoy and its experimental drug, nivolumab.


The objective response rate in the Merck trial across all doses was 38 percent, as evaluated by a blinded central review committee. Objective response rate includes all the patients who had either a complete or partial response.


In Bristol-Myers Squibb' presentation at ASCO in May, its drug nivolumab, in combination with Yervoy, achieved an objective response rate of 40 percent among the 53 patients treated.


Merck's lambrolizumab trial has also showed an estimated overall survival rate of 81 percent at one year across all dosing groups. This is the first time overall survival data have been reported from the Phase 1b clinical trial which is still ongoing.


Merck's clinical trials


Merck is running a huge network of clinical trials to expand its immunotherapy effort.


Lambrolizumab has eight clinical trials running with a total enrollment of 3,000 patients across a broad range of cancer types, including bladder, colorectal, gastric, head and neck, melanoma, non-small cell lung, triple negative breast and hematological malignancies. Additional trials are also planned.


The expansion of the lambrolizumab clinical development program is based on preliminary evidence from Merck's foundational Phase 1b trial which included 1,000 patients with late-stage metastatic carcinoma.


Lambrolizumab was intravenously applied at a dose of 10 mg per kilogram of body weight every 2 or 3 weeks or 2 mg per kilogram every 3 weeks in patients who had received prior treatment with Yervoy as well as those who had not.


The confirmed response rate as evaluated by an independent radiologic review according to the Response Evaluation Criteria in Solid Tumors (RECIST) was 38 percent.


The highest confirmed response rate was observed in the group that received 10 mg per kilogram every 2 weeks.


Responses were durable in the majority of patients during a median follow-up of 11 months. 81 percent of the patients who had a response were still receiving treatment at the time of the analysis cut-off date in March 2013.


The overall median progression-free survival among the 135 patients was longer than 7 months.


The bottom line is that in patients with advanced melanoma, including those who had disease progression while receiving Yervoy, treatment with lambrolizumab resulted in a high rate of sustained tumor regression.


Bristol's trials


Bristol-Myers isn't wasting any time extending the range of its own drug, nivolumab.


It has 6 late-stage studies underway, with FDA designated fast-track status in place for melanoma, lung cancer and kidney cancer. If the data continues to support the early results, Bristol-Myers will have a major new therapy in its portfolio.


The blockbuster Yervoy disables an immune system brake called CTLA-4, but it shrinks tumors in only about 10 percent of patients. Even though the effect in that small percentage of patients can be long-lasting and highly effective, that still leaves an urgent need for new drugs for patients with advanced melanoma.




Roche (OTCQX:RHHBY) targets PD-L1, which the company believes may be a safer approach. Early data from a small study showed that investigators could use the maximum dose safely, making this a strong candidate in mid-stage studies.


Roche's compound is known as MPDL3280A, developed by its Genentech subsidiary. Overall, tumors in 29 patients, or 21 percent, responded to the drug in an early trial.


In the future it may be possible to test tumors for the presence of PD-L1, and use the drugs mainly for those patients, where it is expected to work more effectively.


Roche is also in a hurry, it recently rushed the drug into Phase 3.




Bristol's nivolumab, and Merck's lambrolizumab are antibodies that bind to PD-1, while Roche's drug binds to PD-L1. It is not clear yet which approach is better.


The key is the interaction between the PD-1 (programmed death) protein and PD-L1 (programmed death ligand) protein that allows cancer cells to escape and multiply.


By giving a patient the correct antibody protein to block either the PD-1 or PD-L1 from interacting, the immune system will destroy the cancer cells.


For decades scientists have been trying to understand why the body's immune system doesn't see cancer cells as the enemy and attack them.


Recent discoveries found that tumors create a sort of cloak of invisibility from the immune system. The new class of drugs lifts the cloaking device and allows the immune system to attack.


"You're setting up a fair fight" with the disease, said Nils Lonberg, a senior vice president at Bristol-Myers, in an interview. "The immune system is just as adaptable as the cancer."


It is not clear yet how many types of tumors the drugs will work for. All the companies are targeting melanoma because there is evidence that it is sometimes controlled spontaneously by the immune system. The companies also have data for lung and kidney cancer. Roche's study showed some effect in colorectal and head and neck cancer as well.


Some immunotherapy agents hold particular promise in being paired with drugs that specifically target genetic mutations driving the tumors. Since immunotherapy agents are treating the immune system, and not the cancer itself, this sort of approach should work against different kinds of cancer.


Even companies that don't have any PD-1 or PD-L1 drugs in their pipeline, like Pfizer, are interested studying them in combination with their own targeted cancer drugs.


For PD-1 and PD-L1, the most important interaction is at the tumor site as opposed to the broader impact across the immune system, which is what Yervoy does by targeting CTLA-4.


Investor summary


In the third quarter Merck's pharmaceutical sales declined 4 percent to $9.5 billion.


Sales of Singulair, Maxalt, Temodar and Cozaar declined following loss of market exclusivity. The losses were partially offset by growth in Remicade, Gardasil vaccine, Simponi and Isentress.


Singulair, a once-daily oral medicine for the chronic treatment of asthma and the relief of symptoms of allergic rhinitis, declined 53 percent in sales to $280 million in the third quarter. The patents for Singulair expired in the U.S. in 2012 and in major European markets in early 2013. A rapid fall in sales followed the patent expiry.


Combined sales of Remicade and Simponi, treatments for inflammatory diseases, increased 22 percent to $700 million in the third quarter.


Global sales of the combined diabetes franchise of Januvia and Janumet decreased 1 percent to $1.4 billion.


Sales of Zetia and Vytorin (a combination of Zetia and Zocor), medicines for lowering LDL cholesterol, decreased 1 percent to $1.1 billion in the third quarter. The decrease reflects lower sales of Vytorin, partially offset by growth of Zetia in the U.S.


Merck's sales of Gardasil, a vaccine to help prevent diseases caused by four types of human papillomavirus, were $665 million, an increase of 15 percent for the quarter. The increase was driven by continued strong uptake of its use in males in the U.S., and higher public sector sales of $60 million.


The company's gross margin declined to 62.8 percent in the third quarter of 2013 from 64.0 percent for the third quarter of 2012, reflecting primarily the impact of patent expiries.


Merck has lowered its non-GAAP earnings forecast to a range of $3.48 - $3.52 per share.


The company has increased its quarterly dividend to $0.44, up $0.01 from $0.43 per share paid last quarter. Payment will be made on January 8, 2014, to stockholders of record on December 16, 2013.


Over the past few years Merck has gained a reputation of having a hugely expensive research program coupled with a growing roster of setbacks in the clinic.


There is an air of urgency and excitement around lambrolizumab, which is demonstrated by the sheer size of the clinical trials, unprecedented for the company. Merck badly needs a winner from its pipeline and lambrolizumab has a clear promise to become one.

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Connie01's picture
Replies 0

I was just diagnosed with Stage IIC nodular  melanoma.  I have had surgery and they got clean margins.  My nodes were negative. Just wondering if anyone has had any luck with a clinical trial for this stage?

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WendyD.'s picture
Replies 8
Last reply 12/26/2013 - 11:55am
Replies by: WendyD., Janner, POW

I had 3 more biopsies done this past Monday and I got my results today. One was just a regurlar mole, one look like just a wart, and another had abnormal cells. I asked if abnormal meant melanoma and she said that it didn't say melanoma, basal, or squamous, just said abnormal cells. So she said that the doctor was gonna keep an eye on it and in four weeks he was gonna freeze the rest out. Then as I was on the phone she scheduled me to come in for my wide local excision on Dec.26, which is 3 weeks since I got diagnosed with the melanoma. I'm suppose to pick up my path reports today for the recent biopsies. Ok with that said I have a couple of questions I'm hoping someone can answer for me. 1. What does abnormal cells mean and is that a threat for melanoma, or would the path report specifically say melanoma if that was what they suspected? 2. Are they waiting too long to do my WLE or did anyone else have to wait 3 weeks or longer to get it done? Thanks in advance to whoever answers my questions. :)

In God I Trustsmiley!

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JerryfromFauq's picture
Replies 3
Last reply 12/26/2013 - 10:50pm
Replies by: JerryfromFauq, POW, SBeattie

Salvage Radiosurgery for Brain Metastases: Prognostic Factors to Consider in Patient Selection

Stereotactic radiosurgery (SRS) is offered to patients for recurrent brain metastases after prior brain radiation therapy (RT), but few studies have evaluated the efficacy of salvage SRS or factors to consider in selecting patients for this treatment. This study reports overall survival (OS), intracranial progression-free survival (PFS), and local control (LC) after salvage SRS, and factors associated with outcomes.

Methods and Materials

This is a retrospective review of patients treated from 2009 to 2011 with salvage SRS after prior brain RT for brain metastases. Survival from salvage SRS and from initial brain metastases diagnosis (IBMD) was calculated. Univariate and multivariable (MVA) analyses included age, performance status, recursive partitioning analysis (RPA) class, extracranial disease control, and time from initial RT to salvage SRS.


There were 106 patients included in the analysis with a median age of 56.9 years (range 32.5-82 years). A median of 2 metastases were treated per patient (range, 1-12) with a median dose of 21 Gy (range, 12-24) prescribed to the 50% isodose. With a median follow-up of 10.5 months (range, 0.1-68.2), LC was 82.8%, 60.1%, and 46.8% at 6 months, 1 year, and 3 years, respectively. Median PFS was 6.2 months (95% confidence interval [CI] = 4.9-7.6). Median OS was 11.7 months (95% CI = 8.1-13) from salvage SRS, and 22.1 months from IBMD (95% CI = 18.4-26.8). On MVA, age (P=.01; hazard ratio [HR] = 1.04; 95% CI = 1.01-1.07), extracranial disease control (P=.004; HR = 0.46; 95% CI = 0.27-0.78), and interval from initial RT to salvage SRS of at least 265 days (P=.001; HR = 2.46; 95% CI = 1.47-4.09) were predictive of OS.


This study demonstrates that patients can have durable local control and survival after salvage SRS for recurrent brain metastases. In particular, younger patients with controlled extracranial disease and a durable response to initial brain RT are likely to benefit from salvage SRS.

I'm me, not a statistic. Praying to not be one for years yet.

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Replies by: Mat, Anonymous
Regression Associated With Favorable Outcomes in Stage I/II Melanoma
Br J Dermatol 2013 Dec 01;169(6)1240-1245, S Ribero, S Osella-Abate, M Sanlorenzo, P Savoia, C Astrua, G Cavaliere, C Tomasini, R Senetta, G Macripò, MG Bernengo, P Quaglino
Research · December 18, 2013


  • The role of sentinel lymph node biopsy (SLNB) in patients with melanomas with regression is controversial, as is the prognostic significance. In a retrospective analysis of 1693 patients with stage I/II melanoma, results showed favorable disease-free and overall survival associated with regression in the primary melanoma. Further, the rate of those who later developed regional node involvement with a previously negative SLNB ("false negative SLNB") was lower in those with regression.
  • Regression in melanoma appears to have a more favorable prognostic role than was previously thought, and the use of SLNB in patients with thin melanomas without additional risk factors does not appear necessary.
Commentary by

"These are fascinating data that fly in the face of the general sense that regression implies that the true Breslow depth would have been greater prior to regression, engendering an increased risk of metastases. There will likely be other datasets that can be evaluated or reevaluated to see if this holds true to help guide us in our care of melanoma patients. In the meantime, we will have to explain to patients that, when regression is present in thin melanomas, the data are not completely clear with respect to risks of metastasis and survival." – Eliot Mostow, MD

"It will be interesting to see how this finding holds up in other datasets and studies. If consistent, perhaps this may imply that regression signifies a good immunologic host response to the malignancy. However, this is speculative at this point." – Ashish Bhatia, MD


The prognostic significance of regression in primary melanoma has been debated over the past few years. Once it was considered to be a negative prognostic factor, as it may have prevented proper melanoma thickness measurement, therefore affecting the staging of the tumours. For this reason, it was considered to be an indication for sentinel lymph node biopsy (SLNB) in melanoma < 1 mm.


To ascertain the utility of SLNB in thin melanoma and to clarify the role of regression in disease-free survival (DFS) and overall survival (OS) in our series.


We analysed data collected from 1693 consecutive patients with AJCC (American Joint Committee on Cancer) stage I-II melanoma.


Globally, SLNB was performed in 656 out of 1693 patients. Regression was present in 349 patients and 223 of them were characterized by thin lesions. SLNB was performed in 104 cases of thin melanoma with regression. The majority of regional lymph node metastases were observed in patients who did not undergo SLNB (89 out of 132). Among the remaining 43 'false negative' patients only three showed regression in the primary. Using the Cox multivariate model, histological regression maintained a significant protective role [hazard ratio (HR) 0·62, P = 0·012 for DFS; HR 0·43, P = 0·008 for OS] when corrected for the principal histopathological and clinical features, despite SLNB.


We confirmed that regression alone should not be a reason to perform SLNB in thin melanoma and, on the contrary, it can be considered a favourable prognostic factor in patients with AJCC stage I-II melanoma.

I'm me, not a statistic. Praying to not be one for years yet.

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WendyD.'s picture
Replies 5
Last reply 12/18/2013 - 1:34pm
Replies by: WendyD., POW, Janner

I was recently diagnosed with a melanoma on Dec. 6th of this year.It was .30mm and 0 mitosis and no ulceration, but I still haven't had my WLE yet and am now in the process of waiting for 3 more biopsy reports to come in on some other areas I had removed yesterday. The doctor I am seeing now said he will definitely do the WLE on me once he gets my path report from the old doctor. He doesn't understand why they didn't follow up with me. He also said he believed that one of the areas he biopsied is Basal Cell Skin Cancer, but the lesion is really small and he believed the biopsy itself got 90% of it out. So the WLE will be small. And yes with Basal Cell you have to have a WLE. :( So the waiting is terrible. I don't know how much more of this I can take. My nerves got the best of me today and I had a full blown anxiety attack. It was horrible. Can someone give me some coping ideas here? I have tried to stay positive and I've tried to be strong for my husband and 3 kids, but really I just want to stay in bed and cry. This has really hit me worst than I thought and I don't think I can handle being diagnosed with another Melanoma. The one area he removed really concerned me because it itched and irritated me really bad. I keep trying to tell myself that it was only because of where it was located that my seatbelt and clothing rubbed against and that's why, but I can't keep my mind from going down the road of yes this is another melanoma and it's going to be worst than the first. Okay sorry for the long thread. I'm just trying to vent a little. Anyone please feel free to comment. It really helps for me to hear from others going through the same thing. 

In God I Trustsmiley!

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